slide show

Tuesday, June 19, 2012

Ivy update

Pin It It has been a long day! Even longer I'm sure for our baby girl! She is doing so great, guzzled down a whole container of chocolate milk practically in her sleep and didn't even throw up! Ivy drinks only water at home. I sure hope that drinking milk and smoothies and pediasure will be in her future at home!! She is on oxygen right now but we hope to say goodbye to that by morning. 

And as for her heart, Good and not so good.
They were able to do everything they went in to do. They made her pulmonary artery 4mm bigger than it was. Praise God who can do all things. However... It turns out that there is a bigger problem.
You see even after a successful increase in the size of her pulmonary artery, her lung pressure remains very very high. The drastic leaking from the tricuspid valve, was left unchanged.

I have needed time to grasp all of this. To remember, that Gods plan is and will be amazing. And that He doesn't want Ivy to go through anything more, and He will get her through it. 

Do you remember when we were waiting for the donor organ? Well, Ivy couldn't survive much longer without surgery. And still the size she needed was not coming in. The homograft they had was several millimeters bigger than he had hoped for. But she couldn't wait any longer, so, they made it work. 

And now It is squishing her coronary artery. 

It looked fine in the pictures they took after she came off ECMO. But her chest was still wide open at that time. So they are thinking that when they closed her up, maybe it  caused some unknown  compression? 
Regardless, this new finding sure does explains the tricuspid valve leakage and the hypertension. The lack of energy, heck she should be sleeping all day! But she wasn't, because she's a miracle!
So while it was too big of a homograft, it did save her life. 

So tomorrow they will do a CT scan to see if their finding is indeed correct. And if it is, they will need to discuss the plan to open her heart up again and replace that valve.. again. 

And while I can hardly breath when I envision her going through all this again, she is sooo much stronger this time around. 

No parent wants to see their child in pain, discomfort, danger, or suffer! So I won't make myself out to be something I'm not. Im human, I'm mommy, I love this girl. I want her to be done!! 
None the less,  since I'm just a human, just a mommy, just a regular gal.. I don't know what to do or how to fix this. And God blessed us with a doctor who does. A doctor who eats goldfish out of our daughters hands, looks at her with a twinkle in his eyes, promises her he will do everything he can for her, honestly cares for this little girl that he helped us bring home from China. I will never forget the day we sat with him and he looked at her file and her picture and then her file again and he told us that he would be honored to be a part of Ivy's healing. He didn't sugar coat anything. He had a very old file to look at and it was packed some seriously complicated funky heart business. And he smiled and hugged us and said, We can do this!!! And we can!!! I just don't always like the things she has to endure to get to the next place. Life does this. And we become better people because of it. But it's my baby.... I would trade places with her in a minute! Fix my heart not hers. And then I get back on my reality box and take a big sigh of relief that Gods got this, He has it all orchestrated and it will be marvelous! 

So I'm on my knees tonight, thanking the one who knows what he's doing and knows what is best. We will find out tomorrow how soon this has to be done. Tonight, I'm so very blessed to say I am snuggling in the hospital bed with the cutest 2 year old on earth and she is my daughter!! Pin It


TanyaLea said...

Oh, bless you Mary! Your strength and faith are a beautiful light onto others, and I know God is going to use this journey you've been on to touch others lives in ways you may never have imagined, or may never know. But to Him be all Glory!! She IS your miracle baby and I'm so glad you got some snuggle time with her tonight. God is FAITHFUL and He WILL see her through!

May your rest well tonight, knowing that He is in control, and may He shower you in His grace and give you a peace that surpasses all natural understanding, because He is our supernatural Father God, and He cares for YOU and your precious baby girl!! ♥

Love you, sweet friend!

Blessings & Hugs,
~ Tanya

sierrasmom said...

I am so glad she is resting comfortably. What a fighter your girlie is!!! We will be praying for all to go well the next few days and for just the right size valve to come!!
Hugs to you also!!1

Jeremiah 17:7
“But blessed are those who trust in the Lord
and have made the Lord their hope and confidence."

DiJo said...

You and Miss Ivy Joy are AMAZING!!! And, that AWESOME God of ours has her right where she needs to be!!! I am so thankful that you have a doctor who loves your sweet girl too!! You know he will do everything he can to make her whole again... And, the best part, God is working behind and in front of the curtain to show His stuff!!!! He is so much bigger than this, and He can do it!!!

We love you AZ girls, and we are praying for miraculous healing!

Love from the MN contingent of Team Ivy Joy!!

Kimberley said...

You are in my prayers and so is your beautiful girl. My daughter is a heart baby too. ASD/VSD. These are hard surgeries to go through, but I just know that you all will be ok. God is with you.

Jane Klingenberg said...

What an amazing doctor our great God has provided for Ivy Joy! Any doc who eats goldfish from a little patient's hand is stellar in my book!

So thankful that Ivy is stable and that the underlying problem has been revealed. Now we wait to see how God will continue to bring healing into precious Ivy Joy's little body.

With love and prayers from MI,

Jane and Sadie K

The Harlicka Family said...

Mary, I'm so sorry all the news yesterday wasn't what we'd all hoped and prayed for but I know God is cradling Ivy in his arms protecting her and we will continue to pray for her protection and healing! I also know God doesn't give us more than we can handle, so he must know you are an amazing super mom whose faith knows no limits!! :) Praying for a calm day today for everyone to rest so all are ready for next steps to get sweet Ivy's heart repaired and strong!!
Much love, the Harlickas

maggie k said...

Continuing to pray in CT for Ivy, your family and her team of doctors, nurses and aides.

Yvette said...

Hugs, and prayers. Ivy's strength is only matched by yours. God most certainly knew you were the right momma for her!

Diane said...

Mary, tears are streaming down my face. I know you're pain. I have walked those hospital corridors with our son's open heart surgery. I've sat in the NICU's and watched our little ones kept alive by machines. I've sat and held their little selves when they've wanted a drink and couldn't have one. Nothing breaks a mother's heart like that.
The thought that your precious Ivy has to go though this again just breaks my heart for her and for all of you. Sometimes life is just so hard. Sometimes there's just no way out of the valley but through it. I'm so sorry.
God has brought her so far already!!! He will carry her through this. He will finish what He started. And you will get through it!
We are praying earnestly for your precious one and for you!!! I love your hearts!

Anonymous said...

Continuing in prayer here in Huntley-- God has given you an amazing doctor for the little sweetie hugs to all, Cathy in Illinois

We are all friends not strangers said...

We are thinking of you here at Laguna Beach. The kids are going to send off wishes for Ivy to the Ocean today. Much love. Lisa

dajmommy said...

Praying for you and your sweet Ivy Joy!

My heart aches for yours to see your child go through so much again, but our God Almighty will carry you through when you feel you no longer have the strength.

He brought you to He'll bring you through it.

Love and hugs,

Angie J.

Georgia said...

What a miracle your little Ivy Joy is! Continuing to pray for your strength and energy and her healing. Your testimony is inspiring.

Prayers & Blessings,

the meaklims said...

Your strength amazes me. Your daughter's strength amazes me. I'm so thankful your little woman is through this surgery and the doctors have some answers... again.

So thankful the Lord gives strength in times like these. Praying His grace will lead you through the next few days and weeks and months, and that your beautiful Ivy Joy's little heart is made whole.

Love to you all.

Anonymous said...

Bless you all. We continue to pray for your sweet angel. We are so glad she's resting and that you have doctors who not only know what they are doing, they also are warm and sensitive. God will guide you always.


Arnold family said...

Praying for her health and healing!!It is an amazing step in faith to adopt and care for precious Ivy. Our thoughts are with your family!
Holly Arnold

Shauna said...

Still praying and thinking of you all over here!

stephanie said...

continuing to pray for all of you...

Anonymous said...

Please, God, heal this sweet miracle once and for all. Please - praying so very, very hard.


Design by Deluxe Designs